spinal cord stimulator
 

Hi,
I am considering getting a scs implanted. Has anyone gotten one? If so, did you experience any side effects from the surgery? Any info would be greatly appreciated.
Thanks,
Eileen

Don't Do It!!!
 

Run as fast as you can away from it. It will only cause you more problems if it actually works at all. This is only my opinion. :(

Chin Up!!! Mark

i know this is a very 'touchy' subject.............there are many horror stories about the scs...........EVERY PERSON IS DIFFERENT.....what works for one, may not work for all......it is YOUR personal decision.......

frank just had the trial scs placed yesterday........he was told by me of all the pros and cons...... he was in such pain, he would do anything.............he goes to u of m hospital which is supposedly one of the best in the country, (we were pleased to see that)......his doctor left the decision up to him.................

we met with a person from this forum who loves her scs, and she talked with frank about all that would occur.........from pain, comfort, relief, etc....she eased his mind, and did not sugar coat the recovery.....for this we are eternally grateful......(you know who you are)

frank had a rough night with the pain from the insertion site..................his pain however, which has been at a ten for the past year, was now down to a 3 or 4.......

he did sleep on the couch recliner, instead of our waterbed...........and he did get some sleep........his back is painful.......no doubt about that....and he is not on any of his pain meds.......

HOWEVER today is a totally different ballgame........he feels such comfort, loves the tingle, and the pain is now about a ONE...... he has rsd in his entire left arm, starting at the neck..........................he is so excited, and happy, relieved, and acting like his 'normal' crazy self....if you could hear him now, he has his ipod with the headset, and is singing away......(not a pretty site).....laffff

he told me that he was 'this close' to cancelling the procedure yesterday, but he is so glad he went ahead with it...he does not want to let them take it out..............................

so, this surely is a controversial subject, that is probably why not many persons have replied.........i know that mark has had horrible results from his.....i believe he has had two right mark? i know that you have suffered way too much..........

but the point is, everyone has different results.....the decision is yours, and just weigh the pros and cons..........

there is another forum http://health.groups.yahoo.com/group/Stimulator/ that you may like to check out too.....there are many many positive stories there...............

good luck to you in your decision.............just do a lot of researching.............
big hugs, claudia

Scs
 

Claudia is right. Everyone will react differently. I've had mine for going on 5 years now (I think). I've had 4 battery replacements and one revision to surgically implant the leads. The leads are in forever and I cannot have an MRI due to the leads. It is a huge decision and one only you can make. The trial is temporary and will give you an idea of how it will work for you. Mine was great the first year and started to taper off in it's effectiveness as the years went by. They would reprogram it, but it wasn't as effective for me as it was that first year.

Within our nonprofit organizaiton in MN we have several members with it. I'd say it is split 50/50. Would I do it again? YES, but not have it surgically implanted. That is where I made a mistake. The cathetor method is reversible.


Hope this helps!
Bonnie

Hello Eileen,
I have 3 great CRPS buddies who have SCS's , each of them would not be without them. I had a trial of one and it was awful.
I would certainly consider a trial as I believe that " nothing ventured, nothing gained"
My trial had no long term adverse side effects but I am glad I gave t a go.
Good luck with whatever your decision may be:hug:

I have had mine for almost 4 years, now. A few thoughts from my experience.

1. Research you doctor's experience. Sometimes we hesitate to do that, since there seems are few doctors who even know anything about RSD. But, after I had mine for about 1-1/2 years, a different neurosurgeon said: "Who did this? I would have done it all differently." A different doc might have prevented some of my other problems.

2. The anchors for the lead are not deep enough, so they are constantly poking my skin from the inside. At times, I can't sit back without pillows propping that spot away from the chair back.

3. Question the location of the battery/generator. Mine was put in the hip-buttock area. I don't have as much "padding" there as some folk, and it feels like I am sitting on a fat wallet. (I should be so lucky! ha-ha) An alternate location is in the abdomen, but it is harder to run the wires and you need to avoid the belt area and the crease location when you sit down.

4. It will target a specific area. IF the RSD spreads, the SCS will do nothing for the new area. Unfortunately, that's what happened to me. The original spot is in partial remission, and another area is now going wild. So, the SCS is often turned off.

5. If you fly, you will need special screening from TSA security. Most of them have no idea what a SCS is. So, tell them "it is like a pacemaker, but for the central nervous system." They seem to get that.

Good Luck,

Mike

Glad to hear this!
 

Wow. I am glad he is doing so well with this!! :)

thanks inHis hands
 

frank is still doing great with his trial scs...........his arm is almost pain free, with just a little pain (about a 2) at his elbow, but when he turns his head just a tad, it goes down even lower..............
his back is still very sore tho.
he does not want to take it out, except for his want of a shower.......lafff
we dont' know how long between the trial and permanent one he will have to wait...........they want his back to heal first.......

All I can do is tell you the story of my SCS and hope you can glean some valuable info from it.

One of the most disappointing experiences of my life was the failure of my SCS. I was so hopeful. The trial was great. It knocked down my pain about 40-50 percent. I went ahead with the implantation of the permanent unit. As soon as we turned it on I knew immediately there was a big problem. The coverage went only halfway down my arm. It didn't even reach the elbow where my nerve damge is.

I went on the surgery table three different times while my doctor tried to adjust and placed the leads correctly. He said the leads "kept rolling on him." He finally gave up. I was pretty well done with the SCS until he recommended having paddle electrode emplaced by a neurosurgeon. I went ahead and agreed. The surgery was horrible, the worst of my life. He did a laminectomy and put in two paddle electrodes. They worked OK, not great, for about three - four months, then relief got less and less. Medtonics tried many times to configure the unit so that the coverage would be better, to no avail.

The unit was removed when they implanted my pump. My pump is still working well. I have been doing well lately and only taking 1-3 dilaudid breakthough tabs per day.

love and hope,
Coleen

catching up
 

Hi, did Frank get the permanent one? How is he? Hope you are both well!

Wow! I just noticed
 

......that post before yours is 3 years old!

It would be wonderful if we could get an update!
Really would like to hear from folks who have had these SCS's for more than a year......

Hi,
 

I talk to Claudia every once in awhile. Frank does have the SCS in but he has gotten worse due to it going to the other side. The last time I talked to her which was a few weeks ago he is in pretty bad shape. Lots of pain.

I'll see if I can get her to come on and let you know how he is with the SCS.

Ada

hello .......sure has been a long time since i was here.......................

frank still has the scs implanted...he is still on the fence about it.......has been in for over two years now..........

he likes the fact that he can now hold a coffee cup, touch his arm, not hate the water from a shower, the color is now normal, and the swelling is minimal..................however......

the scs did nothing for the pain.........he can now use his left arm, but the pain is still there...........he is on ms contin, oxycodone, topamax, valium, and lidoderm creme...............his pain is still horribly high, he sleeps a LOT to get away from the pain.....his memory is horrible, he is just not a happy camper.................

would he do it again? nope
would he give it up? nope.......................

he has lost a lot of mobility in his neck...........his scs is implanted at the c 2 c3 in his neck...............so he has trouble turning his head.........the battery is in his chest.....right side and does stick out.......it is tender, not really painful, but he has had several bouts of pain thinking he was having a heart attack, but it was all from the rsd and battery tightening around the chest wall......................

he had another trial to see if they could get coverage on his right side, but they could not get it in, as his arms were spasming so badly...............his rsd is in both arms, his knees are affected, and his legs just give out with no warning.....................RSD is really a shi**y disease.!!!!!!

mine is at a minimal balance................warmer weather in florida is a Godsend, no more cold snowy winters..............i have less pain than before, and i feel blessed for that.................

do your research.....it is a decision only YOU can make................everyone is different......................

hello to all my oldie friends... :) .............

Thank you for those updates !
 

It amazes me how many people are coming here on a daily basis asking about the SCS/Pain Pumps ! And for those who don't know, a new forum specific to SCS/PP discussion has been created. Here's the direct link to get there
Click on:

http://neurotalk.psychcentral.com/fo...prune=-1&f=118

It is listed in the main menu as a subforum in the "Medications" section

Lots of new testimonies there and lots of questions being asked......
So much support is needed!
I get tears in my eyes when I read of these battles with RSD, and the ones who get the SCS and end up with RSD spreading.....:(

All I can do is pray.....
I'll never understand RSD and why so many wonderful people have to be plagued by it.....

So Sorry!
 

I'm so sorry about what's happened! I hope there's something that brings him relief and peace again. God Bless you both and know that lots of prayers are being said for you.

spinal stimulator defect
 

September 15 2008, while doing an exercise,after having the stim for only 5 months, I was thrown to the floor and was in electric shock for about 20 minutes. When I went to the hospital, it was also found that the stimulator had also caused a heart attack. I could not move below my waist for about 6 days. A bioengineer, flew in from San Diego, where in front of 8 witnesses, he used his remote, and found out that the stim was working on its own. He called it dysfunctional. To stop the stim, he had to use magnets to shut the whole system down. I continue to have medical probs, and nerve damage. Lawyers don't want it, because you can't sue a medical manufacturer. My day to get a lawyer is coming to an end.

ONE help : I have been in touch with Jon Bristow on KGO radio. He is very interested in getting to the truth. He needs facts, bullets. He is there for us. To put in your input and hopefully stop the docs from putting it in without more information,email
**

Please help to get it out there. To reach me please feel free to contact me at **

Thanks.

SCS Problems
 

Boy I am glad To see some real post about how these SCS really work for people with nerve damage in the upper part of our body's arms, hands, wrist ect.

In the past 2 days I have read on this and another forum a lot about SCS nightmares. It seams that these work well on folks with lower back, hips,and leg pain. When it comes to arms, hands, wrist, shoulders with nerve pain is when I have read most not all but upwards of 95% had theirs removed.

My PM Dr has been trying to had sell me on having one of these implanted even before he ever looked at me. I had a Dr.visit last Tuesday and he again tried again to hard sell me on this after seeing him for 6 months. I told him no so he wants to send me to the Mayo for a 2nd opinion. My nerve pain just keeps getting worse and spreading up my arm into my back. My pain on my meds stays around 7+ to 9+ by the end of the day.

My PM Dr. has told me that I have the worst case of crpsII in a whole arm, hand, wrist, shoulder area that he has ever seen. As I have told him I do not have a very good feeling about someone messing around my spine in the nerve area since this all comes from a Dr. cutting my nerve by mistake in the first place.I ask my Dr. some questions about the SCS and I saw that he was getting p.o. with me. I have a voice in the back of my head that keeps telling me to not do this. I have to go with my voice it has never failed me yet.

I feel very bad for all these folks that have had this done and are now in more pain then before. I hope over time that there pain from these SCS will go away. It is sad to try to re-leave the main pain only to end up with more unexpected unnecessary pain.

This is my 2 cents on this subject.

This is the main reason my wife will not consider a SCS because she has upper limb RSD that has spread to her lower limbs. I too have read several unpleasant issues with scs and upper limb RSD.

Scs..
 

I wish I could share more happier news, Iam all about happy, ya know.. BUT SCS it is a big negative for me..First you get excited for pain coping tool/intervention then once you have surgery, recover only to find..mine did spread ..just as much RSD pain as before and now painful back where I am deeply wired.. leads go the length of of my body internally to my shoulder blades inside my spinal column with my box living in my hip fleshy spot..

Sorry, I would send happy vibes if I had em..

Hugz, Kathy:grouphug:

RSD is a strange condition in that some procedures work for some not others. Catch 22 also fits this disease in so many ways. My wife made up her mind years ago (after doing extensive reading on RSD) to avoid evasive procedures. She did except physical therapy and ketamine infusions. She avoided surgeries, blocks etc.. Her thinking is the disease will spread most likely so let it take its course without speeding the process up with temporary fixes. There is a logic in this thinking, but I'm sure for others it's not. Many doctors did not like my wife's thinking on this and disregarded her as having the pain in her mind instead, even though she showed most physical symptoms of RSD and a severely crippled right arm and hand. By not allowing doctors in the early stage of her RSD to poke and prod, cut and stick etc. my dear wife was severely neglected by doctors. However, over time the disease has spread but I think she may have been worse off if evasive treatments took place.

SCS not for me
 

Here is my thought.

I went to my hand Dr. 4 months back to see about having joint surgery to my thumb on my left hand. She said that now that I have been DX with crpsII she feels that this is to evasive and will cause my crpsII to spread over to that hand.

Now having a SCS implanted is evasive as it gets as far as I am concerned. But my PM Dr. is more then willing to do this surgery without a second thought. If one surgery that would make my life better for me as far as getting the left hand thumb joint replaced should not be done why is it O.K. to do the SCS surgery.

I will take my time and changes with not doing the SCS implant because once done anything that needs to be looked at by a MRI cannot be done so you are left with having more unneeded surgery's therefore causing more spreading of the rsd/crps. I hope this is making sense to everyone.

I am going to go to the Mayo Clinic to see what other options I have to help with my nerve pain.

Id avoid getting
 

I had a SCS put in 5-6 months ago for my RSD in arm. Did the test period for a week, It helped a little bit but shocked me everytime I moved .

I told doc about it he said that will go away when permanenetly implanted , I really didnt want to go through with it but since Im On Work Comp I had to .

After 2-3 weeks of having the Perm in, I went to Doc office and Medtronics woman was there to adjust the settings , Because it Was still shocking me with movement , So she strapped the Reciever part to my lowe rback and started to adjust the thing.

Make long story short she electricuted me for 10-15 seconds I couldnt move and was locked up , All I could do was scream Turn the (Profanity ) thing Off ! Said it 3-4 times before she got it turned off .

Once she did get it off I fell to the ground , She ran out of the office never to return or be seen again . I compare it to be shocked by a stun gun , though never have been but seen people who have . From that day on I told Doc Work Comp and anyone else I will never turn that thing back on and it hasnt been back on .

Now I been waiting for Work Comp Approval to remove , They agrreed but sai dI Need to see a psych first which I did then waited another month or so , Then they said I need to see a NEW Doc Which I did .

And Here i Sit about 5-6 months later waiting for approval to remove this thing . Also I have not mentioned the Battery is extremely uncomfortable it feels like it wants to push right out of my skin and you can see it and feel it through the skin .
Now I will decide NOT Work Comp what I will and wont do , Dont care about them not paying or their threats , If I dont Like something it aint gonna happen !!!!!!

Sorry above is what happened to me
 

What happened to me probably wont happen to anyone , Its Just my luck.

I would add that the 3 weeks I had it in , It never really helped a whole lot, The shocks I would get where more annoying and sometimes quite painful.

Again just my exp , We each need to make our own judgements on what to try .:winky:

Sorry to hear about your issues with your scs DONTTOUCHIT. I'm so tired of hearing about those who have RSD and psychs. This has happened with my wife who has RSD several times. I believe psychiatric help is a good thing when it is perceived as help, not when your judgement is called into question when one has a confirmed severe pain disease. Just seems to smack of the former Soviet Union. I once mentioned this to my wife's doctor who wanted her to see a shrink because she refused to take psychopathic meds in-which she has done before and made her feel very sick. One other thing about the SCS that may or may not be true but both my wife and I have read is the SCS works better with the lower extremities than the upper.

Jim that is it exactly , I wasnt crazy to get the thing put in , Now all of a sudden I am nuts wanting to take the thing out? LOL The system is what is crazy not me . In the above post I meant to say I had it TURNED ON for 3 weeks not implanted in me for 3 weeks .

If WC would just stop dragging their feet on everything , Youd think theyd make more money rather then pay me too sit here and wait months for approval to take a breath.
To get back on the Psychologist , When I met with him he said That I wasnt a good candidate for the SCS LMAO Because I had problems with the temporary one . SO again WC makes fools of themselves instead of just treating me and moving on . Ill keep ya posted when they finally to decide to remove this thing .

i totally agree, tried it three times. each time got infected.once out the pain was back in a matter of minutes.worse feeling i ever experienced in my life,brother use to crack on me cause i had a titanium battery in my ***.i was in so much pain just was looking for any kind of relief.totally advise against it,just the procedure alone was an horrible experience,plus still had to take meds,with it in

Finally got my Medtronic remover in early part of November , After 5months of waiting. The battery location is still giving me all kinds of problems yet, Feels like my arm that has th crps in it hope it didnt spread to that area just above waistline

Psch Eval Finished
 

I've had a back surgery that failed. That surgery was to fuse my lumbar, L2 - S1. I did not have that surgery until 5 yrs after my injury, my decision. After surgery, I had complications, massive blood clots throughout lower half of body. Almost died and in hospital & rehab for 30 days. I now have pain in my back, numbness & pain in left quad muscle, throbbing pain behind left knee area, and numbness plus pain in bottom of left foot. Some days are okay, some aren't. Pain mostly between 4 & 8. Use timed release morphine sulfate and oxycondone for breakthrough and 7.5mg Cumadin daily for the clots.

Just saw the psychologist this week. She okay'd me for the SCS implant. I'm on WC as well. My "psychiatrist" thinks I'm not. I want to dig this brace out of my back as it is now.

I'm scheduled to talk with the PM next month about SCS trial. Don't mind the trial so much, but I do not want more pain or another surgery or renewing the desire to physically remove the SCS.

I've adjusted to my pain and can function okay, but not work. My working days appear to be over. I have a cane I use to help with the bad leg and foot drop issue. I have requested a wheelchair, sport type, to move around shopping malls and outdoor events as I miss doing those.

From the overall responses I garner that most aren't having great success with their SCS units and that the risk of something occurring during the procedure is pretty high.

What is a person to do?

Be sure to check out the SCS link. There are some really knowlegable (sp) people on that forum that can give you some good advice. I am about 6 weeks into my implant and am having a pretty good result.